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Sun Feb 17, 2019, 02:39 PM


I have a brother with advanced ALS. It took awhile to get diagnosed but Id say its been about 5 years since he was officially diagnosed. At that time he was weak and had trouble breathing. Now hes in an electric wheelchair and uses a ventilator. He can still talk and eat and just enough in his fingers he can barely run his joy stick for the wheelchair.

He was on hospice a couple years ago but apparently the disease wasnt progressing fast enough and after 8 months they kicked him off. Id heard theres about a 6 month time limit on hospice. Ive been giving him pot extract capsules for a couple years now. He and my sister theorize that has helped him slow the progression. Also helps with his mood which is essential for someone who has to totally live in their head.

He keeps an amazingly good attitude most of the time. If it was me Id have moved to one of the states with assisted suicide along time ago. But he seems to be living more and more in a fantasy world. Thats good for him in the situation but hard on his caregivers. My sister said shed read that mental deterioration is commen in about half of ALS patients. Just wondering if others who have someone suffering from ALS have noticed mental symptoms?

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